Day 27

(This is how I found her when I walked in)

Yesterday (Wednesday) there was a white-ish liquid backed up in Lyla's tube. Usually it's meds or mucus so we thought it might mean milk, which would mean the ND tube was not where it should be. After going down to X-ray, they were able to follow the line with dye and confirmed that the tube had NOT moved. So this means.... Not sure. It's possible there was some back leakage of the tube from the intestine, but it's pretty well placed so I'm not sure what happened. And the Dr is not too worried about it as long as Lyla doesn't get more gaggy or start spitting up, and so far she hasn't.

She did have a bad fit in the afternoon which she hasn't had since Saturday ( according to Dr. Vlautin). She was pooping and got really upset and turn purple in the face and really modeled all over. She continued to have smaller fits/random outbursts for a good part of the afternoon, maybe an hour or two, where I would be continuously patting her back to calm her down. This, coupled with the milk, had us feeling strongly about postponing bringing her home soon.

The Dr. Had taken Lyla off Ativan the day before and felt this was also a contribution to Lyla being uncomfortable. She is getting the tiniest dose that we aren't sure it's even getting down the Gtube sometimes, but I guess Lyla likes it. So she is back on with the plan of fewer doses to gradually wean her again.

Talk is still going on about a different line to feed Lyla. Dr. Vlautin originally thought the G-J tube but Lyla is too young and small. So now she would get just the J from her Mic-key, removing the line to her tummy, and replace the ND down her nose to a NG so we could give her medicines that way. The medicines need to go to her tummy and not the small intestine. I'm not sure which way they will go, but if she's not big enough for the G-J, then there is no point of switching anything around.